[CIS-PAGID] Peripheral neuropathy in CVID

[Nelson, Robert P Jr]

Agree wholeheartedly with Kate. I haven't seen this but will look more closely thanks to these communications.  Bob
________________________________________
From: pagid-bounces at list.clinimmsoc.org [pagid-bounces at list.clinimmsoc.org] on behalf of Sullivan, Kathleen [sullivak at mail.med.upenn.edu]
Sent: Wednesday, April 18, 2012 4:49 PM
To: pagid at list.clinimmsoc.org
Subject: Re: [CIS-PAGID] Peripheral neuropathy in CVID

This discussion has me slightly worried.  I have not seen this but I would request of those who have to put their data together and report to CSL, write the cases up and perhaps think of querying USIDNET to see if there are other cases.

Kate
On Apr 18, 2012, at 4:29 PM, Riedl, Marc wrote:


> I have an adult CVID patient who developed worsening of pre-existing idiopathic peripheral neuropathy when switching from IVIG to SQ Hizentra.   In addition, her pre-existing gastrointestinal malabsorption (also not well-defined despite extensive GI evaluation) worsened on SQ treatment.  She has recently switched back to IVIG given these developments, but too early to judge whether this move will improve her conditions back to "baseline".    Given the concurrent worsening of these "CVID-associated symptoms" my impression is that there is some beneficial effect of the higher peak levels achieved with IVIG that we're unable to attain with SQ, rather than this being a product-specific side effect.  If a patient is willing (mine was not) would be if interest to switch to a different SQ product to assess effect.

>

> Best,

>

> Marc

>

> Marc Riedl, M.D., M.S.

> Associate Professor of Medicine

> Section Head, Clinical Immunology and Allergy

> UCLA - David Geffen School of Medicine

> 10833 Le Conte Ave, 37-131 CHS

> Los Angeles, CA  90095-1680

> Tel 310.206.4345  Fax 310.267.009

>

>

> From: <Church>, Joseph <JChurch at chla.usc.edu<mailto:JChurch at chla.usc.edu>>

> Reply-To: pagid listserve <pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>>

> To: pagid listserve <pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>>

> Subject: Re: [CIS-PAGID] Peripheral neuropathy in CVID

>

> I follow a 12yo boy who had a similar experience when switched from IVIG to SC Hizentra.  His peripheral neuropathy (diagnosed by Neurology here) affects an area around the infusion sites and radiates to his scrotum.  These symptoms have persisted despite the switch back to IVIG.

>

> The patient also has symptoms consistent with a mild form of mitochondrial disorder and has been diagnosed by our Genetics group as such.  Pain syndromes are often part of the mito picture, so I don't know if his neuropathy is related to mitochondrial dysfunction or the Hizentra infusions, both or neither.

>

> Joe Church

> Children's Hospital Los Angeles

>

> From: pagid-bounces at list.clinimmsoc.org<mailto:pagid-bounces at list.clinimmsoc.org> [mailto:pagid-bounces at list.clinimmsoc.org] On Behalf Of Howard Lederman

> Sent: Wednesday, April 18, 2012 12:32 PM

> To: pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>

> Subject: [CIS-PAGID] Peripheral neuropathy in CVID

>

> I have an adult CVID patient who has developed an idiopathic peripheral neuropathy while on Hizentra.  My first reaction was to think that this was merely a coincidence and not cause and effect.  However, yesterday I received a call about an out-of-town patient who had CVID, had recently been switched from IVIG to Hizentra and then  developed parasthesias.

>

> Do any of you have patients with similar histories?

>

> Howard

>

>

> Howard M. Lederman, M.D., Ph.D.

> Professor of Pediatrics, Medicine and Pathology Division of Pediatric Allergy and Immunology Johns Hopkins Hospital - CMSC 1102 600 N. Wolfe Street Baltimore, MD 21287-3923

> Phone: 410-955-5883

> Fax: 410-955-0229

> Email: Hlederm1 at jhmi.edu<mailto:Hlederm1 at jhmi.edu>

>

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Kate Sullivan, MD PhD
Professor of Pediatrics
ARC 1216 Immunology CHOP
3615 Civic Center Blvd.
Philadelphia, PA 19104
(p) 215-590-1697
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